Many of the responses to this blog and to my email to friends and acquaintances have referred to my “courage” in making it all public. I certainly don’t mind my friends thinking me courageous, but my making things public is not an act of courage. To call me courageous because I acknowledge my actual physical and mental condition implies that there would be reason to fear other people’s knowing.
Why is it courageous to invite my immediate and wider community to share in my pain, to give them the opportunity to support and comfort me and my wife Marja, to lessen their fear over and embarrassment over the disease, to prepare themselves for a similar pain? Really, what’s to fear? Mockery? Rejection? Abandonment? What?
Certainly people may reject me (although that’s not at all my experience so far), but wouldn’t those people abandon me later, anyway, when my symptoms became more obvious and there was more to fear or be embarrassed about? And wouldn’t they be even more likely to do so if they didn’t know that I knew I was impaired? Inviting people into my reality, it seems to me, makes it considerably less likely that they will ultimately abandon me. And inviting them in now when I’m still pretty competent at least gives them and me a chance to learn from each other and become more comfortable with each other before my condition deteriorates.
Refusing the label of courageous is not false modesty on my part. In fact the emails and comments I’ve been getting since letting people know have been full of love, admiration and respect, making my disease considerably easier to live with. And, to tell the truth, I’m not above reveling in all the good things people have said about me in their emails. It’s been a little like being able to listen in on your own memorial service.
Before the diagnosis, my embarrassment over praise and fear of appearing conceited would have made it difficult to accept their compliments. Now I say to myself: Yes, my life has been good; I’ve accomplished important things; I’ve made the world a better place. Making the diagnosis public is much less courageous than it is confidence in what will give me the greatest joy and satisfaction.